NCT00787995

Brief Summary

This multicenter, multinational, longitudinal study will quantify endurance and respiratory function in subjects diagnosed with MPS IVA and will better characterize the spectrum of symptoms and biochemical abnormalities in MPS IVA disease over time.

Trial Health

68
Monitor

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
353

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Oct 2008

Longer than P75 for all trials

Geographic Reach
10 countries

15 active sites

Status
terminated

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

October 1, 2008

Completed
1 month until next milestone

First Submitted

Initial submission to the registry

November 6, 2008

Completed
4 days until next milestone

First Posted

Study publicly available on registry

November 10, 2008

Completed
5.6 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

July 1, 2014

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

July 1, 2014

Completed
Last Updated

December 8, 2014

Status Verified

December 1, 2014

Enrollment Period

5.8 years

First QC Date

November 6, 2008

Last Update Submit

December 5, 2014

Conditions

Keywords

Mucopolysaccharidosis IV type AMPS IV Type AMucopolysaccharidosis IVAMPS IVAMorquio A SyndromeLysosomal Storage DisorderLSDN-acetylgalactosamine-6-sulfatasegalactose-6-sulfataseGALNSenzyme replacement therapyERT

Outcome Measures

Primary Outcomes (2)

  • Endurance

    Study Visit

  • Respiratory Function

    Study Visit

Study Arms (1)

MPS IVA

Subjects with mucopolysaccharidosis IVA (Morquio Syndrome)

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Subjects diagnosed with MPS IVA

You may qualify if:

  • Willing and able to provide written, signed informed consent, or in the case of subjects age \< 18 years, provide written assent (if required) and written informed consent by a legally authorized representative after the nature of the study has been explained, and prior to any research-related procedures.
  • Documented history of reduced GALNS activity relative to the normal range of the laboratory performing the assay, or documented result of molecular genetic testing confirming diagnosis of MPS IVA.
  • Willing and able to comply with all study procedures.

You may not qualify if:

  • Use of any investigational product or investigational medical device within 30 days prior to screening.
  • Previous hematopoietic stem cell transplant (HSCT).
  • Concurrent disease or condition that would interfere with study participation or pose a safety concern.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (15)

Unknown Facility

Oakland, California, United States

Location

Unknown Facility

Chicago, Illinois, United States

Location

Unknown Facility

Córdoba, Argentina

Location

Unknown Facility

Porto Alegre, Brazil

Location

Unknown Facility

São Paulo, Brazil

Location

Unknown Facility

Montreal, Quebec, Canada

Location

Unknown Facility

Lyon, France

Location

Unknown Facility

Paris, France

Location

Unknown Facility

Mainz, Germany

Location

Unknown Facility

Monza, Italy

Location

Unknown Facility

Amsterdam, Netherlands

Location

Unknown Facility

Taipei, Taiwan

Location

Unknown Facility

Birmingham, United Kingdom

Location

Unknown Facility

London, United Kingdom

Location

Unknown Facility

Manchester, United Kingdom

Location

Related Publications (1)

  • Martell LA, Cunico RL, Ohh J, Fulkerson W, Furneaux R, Foehr ED. Validation of an LC-MS/MS assay for detecting relevant disaccharides from keratan sulfate as a biomarker for Morquio A syndrome. Bioanalysis. 2011 Aug;3(16):1855-66. doi: 10.4155/bio.11.172.

Related Links

MeSH Terms

Conditions

Mucopolysaccharidosis IVLysosomal Storage Diseases

Condition Hierarchy (Ancestors)

MucopolysaccharidosesCarbohydrate Metabolism, Inborn ErrorsMetabolism, Inborn ErrorsGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesMucinosesConnective Tissue DiseasesSkin and Connective Tissue DiseasesMetabolic DiseasesNutritional and Metabolic Diseases

Study Officials

  • Celeste Decker, MD

    BioMarin Pharmaceutical

    STUDY DIRECTOR

Study Design

Study Type
observational
Observational Model
CASE ONLY
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

November 6, 2008

First Posted

November 10, 2008

Study Start

October 1, 2008

Primary Completion

July 1, 2014

Study Completion

July 1, 2014

Last Updated

December 8, 2014

Record last verified: 2014-12

Locations